I wonder how many times a day I see a bald head, a sweet face with that pale yellow tube leaving the nose, taped across a cheek.
September is Childhood Cancer Awareness Month. My Facebook feed is literally packed full with pictures of kids with cancer. Some with bald heads and sporadic hairs, tiny emaciated bodies, dark circles under their eyes. So many dead kids. Accounts of brutal treatments, how many rounds of chemo, of radiation, of antibodies, surgeries. This is when we pull out all the stops. This is when you drag out those dark pictures, the ones without the smiles, the ones you can hardly bear to look at. These are the silent screams that declare, “DON’T LOOK AWAY.” Many of these faces I know. Others are friends of friends, scattered across the country. Of course there are also the pictures of happy, bright faces, eyes that shine. These are the pictures that hope you realize these are just ordinary kids, they could be your own. These are the lives that we are fighting for.
The last week and a half has been incredibly busy and at times brutally stressful and hard. Even now I feel the tension that lately never seems to leave my neck and shoulders, clamped down like a vice, a viper with its fangs gripping the back of my neck. I know, I know. I must seem mellow dramatic. But do you know what it’s like to see your friend’s kid with the leukemia literally pushing its way into their mouth, sweet lips that can’t even close over the intrusion. This is the same sweet child that only months ago joyfully walked the hallways of the cancer unit with little shoes that squeak with each step. These two girls fight the same beast, Acute Myeloid Leukemia. Allistaire’s eye is looking off again. Something doesn’t seem right. I fear these T-cells haven’t stopped the onslaught. She rubbed her jaw today, saying it hurt. She didn’t cry. Within 15 minutes she hadn’t complained about it again. But pain in her jaw, so close to her eye where we know there’s cancer…I am surrounded by cancer, drowning in it.
I wrote the above on September 11th, eleven days ago. I could taste cancer on my tongue, some sort of acrid saliva. The very cytoplasm of my cells seemed to swell with the dominating presence of cancer. I wanted to scream and run, with fury, with rage, with terror, with ragged exhaustion, with desperation to flee, to at long last burst through that glass wall that isolates and corals us off from the life for which we so long.
For nearly two weeks Allistaire seemed to be growing literally more and more crazy. Without exaggeration, I thought she was headed for some sort of psychic break, dragging me along right behind her. Some sort of terror, fear was building in her, mounting to some peak or perhaps plunging to dark depths. She would repeat to herself, “I’m afraid, I’m afraid, I’m afraid.” Afraid of what? “Afraid of throwing up, afraid of I don’t know.” Meds, which she must take three times everyday, 24 doses in all, became an epic battle sometimes taking an hour, sometimes resulting in her throwing up and having to do it all over again. She was completely irrational and nothing I could say seemed to get through her crazed state. The intensity mounted. Everything depends on her getting those meds in. Her tummy pain was increasing. She ate less and began to lose weight. A feeding tube loomed. “It either goes in your mouth or up your nose,” I tell her. I felt like I was failing on the two tasks most directly entrusted to me: getting her to eat and to take her meds. Our days felt frenzied. When my eyes opened to meet the day I would feel dread smothering, knowing it was only a short while before it would be time for her to eat and take meds again.
I was frantic for help. Karen, our PAC (Pediatric Advanced Care) Team person provided a referral for Allistaire to see the child psychologist. For the first time in my life and certainly in Allistaire’s treatment, I realized her little mind might really benefit from meds to help her calm down. I only hoped I could make it through the week until we saw her. We also had a GI (gastrointestinal) consult to try to sort out the tummy pain she’s been experiencing. It’s hard to know how much of the pain is anticipatory and in her mind and how much is real. After her incredibly severe typhlitus infection and the more recent ileus, it would be really great to know what’s going on inside and if there’s anything that can be done to help. But prior to these appointments, she would see cardiology for yet another echocardiogram and EKG.
On Tuesday morning, 9/8, I brought my bright green sticky note to Allistaire’s lab draw. “Digoxin,” was scrawled across in black ink. When Allistaire was inpatient for her ileus, a Digoxin level had been drawn with labs one day and showed that since she wasn’t taking her meds with food, it wasn’t being as well metabolized and so her dose was increased along with several other meds. Once her ileus resolved most meds returned to their pre-ileus dosages. Soon after she was discharged from the hospital, I called to ask the cardiologists about her Digoxin dose and to see if we needed to test her level again as they hadn’t adjusted it. I was told then that it was fine for now and would be retested in 2-3 weeks. I asked the nurse drawing labs Tuesday morning and was told it hadn’t been included on that day’s lab orders but could be added up to 8 hours later. Next I whipped out my green sticky note for the cardiology nurse and she said that Dr. Hong had mentioned wanting to get a level.
So it turns out Allistaire’s Digoxin level was 5. The goal range is .5 to .8 with 1 being fine and anything over 2 being bad news. Digoxin originates from Foxglove and in high doses can be very toxic. Her Digoxin was immediately held in order to get the level down. It wasn’t until about a week later that I thought to look up side-effects of Digoxin toxicity. Though these are listed as “less common”, I’m guessing having a level that is 5 to 10 times higher than desired might amp up these effects. “Agitation or combativeness, anxiety, confusion, depression, diarrhea, expressed fear of impending death, vomiting, loss of appetite, weight loss, low platelet count.” These are just the ones listed that seem to directly relate to what Allistaire was experiencing. In addition, her Pozaconazole level, an anti-fungal, was about 4,000 when the goal level is 700. Some “more common” side effects of pozaconazole are, “abdominal or stomach pain, body aches or pain, confusion, diarrhea, nausea or vomiting.” Other less common effects include “anxiety, change in mental status, mental depression.” Again, I have only listed those side effects which I specifically saw Allistaire exhibit. I only thought to look up side effects later because of the dramatic improvement she made once her Digoxin was stopped to get the level down and the pozaconazole was nearly cut in half. There was a night and day difference. The girl who fought me for an hour on meds can now take them in 3 minutes. She is not afraid anymore. I did switch to lactose free milk at the same time her pozaconazole dose was decreased, but either way, her stomach pain has reduced to nearly nothing. She has been doing a much better job eating and has actually gained back some of the weight she lost.
Her other big cardiac med change was the exciting switch from Enalapril to Entresto. Entresto is a drug newly fast-track approved by the FDA this July for heart failure. In a massive, well-conducted trial, Entresto was compared to Enalapril, the leading heart-failure med, and shown to have significantly greater impact. The heart-failure team first told me about it way back in February or March. I asked Dr. Law about it in August and he said that it had just been approved but it has never been studied in children and he wasn’t sure the hospital would approve him prescribing it, if even it was available. The man, who is typically quite mild-mannered, was visibly excited about it. So Allistaire began her first low doses of Entresto a week and a half ago. Assuming her blood pressure doesn’t bottom out, they can continue to increase her dose until it reaches the optimal level. This is exciting given our utter dependence on her heart improving for any hope of curative cancer treatment.
While the calculation of her ejection fraction on this latest echocardiogram was less (previously 41 and now 37), Dr. Hong said the function of the left ventricle squeeze looks the same and there was actually significant improvement in the dilation of her heart. Her left ventricle went from 4.7 cm to 4.2. A year ago before all of this, it was 3.9cm. A dilated heart indicates a heart working too hard and quite ineffectively. When I think back over the last 9 months, I am overwhelmed at how rough the road has been, but the truth is, it has been vastly better than it could have been. I will never forget the sensation of my legs falling away beneath me as I read that horrifying echo report in March where her ejection fraction was 11. I will never forget the solemn nods of affirmation in our subsequent care conference when I said, “So in summary, none of you think she’s going to make it.” The cardiologist said there was pretty much no way she could recover her heart function. A weak heart cannot begin to endure all that is necessary to beat AML between hard-core chemo, intense infections and simply unbearable pain in transplant that necessitates everything going into the body be given by IV. And yet here we are, here we are. With tears immediate, I smiled a great heaving smile with cheeks pressing up against my eyes when the cardiology nurse, Jen, told me Allistaire’s BNP was 51. FIFTY-ONE!!!!!!!!! This was the very first time Allistaire’s BNP, a measurement of heart distress, had ever been in the normal range of 0-90. On the day of that wretched, heart stopping care conference in March, her BNP dropped from the astronomical height of “greater than 5,000,” for the very first time in weeks. Gosh this has been a crazy-making, exhausting, brutal road but I laugh out loud with joy for the number of times we have been told that Allistaire just won’t make it and then she just keeps going. Maybe she won’t. But she has overcome what has been described as insurmountable obstacles.
How many times have I called out to You for mercy Lord? Mercy. Mercy. And He has, over and over and over. Thank You Father for all the days you have sustained us!
Wednesday the 9th arrived and we got to meet Joanne, the psychologist. I left feeling encouraged that there might really be some tangible ways to help Allistaire learn coping skills and overcome her fears. That day we also met with Taryn, her new hospital school teacher, who schedule allowing, will meet one-on-one with Allistaire for an hour on Wednesday and Friday afternoons. I won’t lie, I find myself zooming past the endless Facebook posts with “first day of school,” pictures. All those smiling faces with cute outfits by the front door with chalkboard signs declaring the next grade, sobs choke my throat and I try to turn away. This is Solveig’s fourth year of school in a row of which I will miss significant chunks. I missed her first day of 2nd and 4th grade. And Allistaire, her first day of preschool last year was nothing like I had hoped or imagined. She cried with no way to be comforted for hours. It was her arm. Her right arm up near her shoulder where a month and a half later we would see evidence of leukemia eroding the bone. Of course she was crying. Her cancer was literally eating away at her flesh. This is not what I thought my daughters’ elementary years would look like. It grieves my heart. I turn away from my visions of what I think “should have been,” and focus on what is our reality. This is the land the Lord has given me.
Wednesday morning also brought a significant turn of events. In my heart, back in the corner, in a place unwilling to stand out in full exposure of light was a secret hope stowed safely away. I wanted to bring Allistaire home. What I really desperately wanted was two weeks at home with all four of us. The problem was that Allistaire had a clinic appointment at SCCA on Tuesday, 9/15 with a lab draw for the T-cell research study. So the night of the 15th would be the earliest we could head home. Bordering the other end of a trip was the necessity to re-stage Allistaire’s disease. Dr. Cooper had recommended doing another bone marrow, brain MRI and PET/CT three to four weeks after the T-cell infusion. Given the changes I had been seeing in Allistaire’s right eye, Sten and I did not feel in good conscience we could delay even a week which would on one hand give us an additional week at home and on the other given that blasted cancer one more unfettered week. This meant we’d have to be back in Seattle by the 21st. But that morning I received a wonderful call back from the research study nurse who said there was no reason that Allistaire couldn’t be seen in Bozeman and have the research lab drawn there and simply Fed-Exed back to Seattle. There was a moment of elation and then it was game on. To get Allistaire out of Seattle required an extraordinary amount of coordination and details especially now that her care was being coordinated between Seattle Cancer Care Alliance, Seattle Children’s Oncology, cardiology and our beloved pediatrician, Dr. Angie Ostrowski, in Bozeman. This meant making sure I had sufficient quantities of all her meds, dressing and line care supplies, and clear orders on how to deal with fevers, infections, fluids, blood pressures, labs, transfusions and clinic visits. Thursday she got tanked up on platelets and on Friday we spent the first half of the day at the hospital while she got red blood before we headed off to the airport. Allistaire was literally beside herself with joy. She could not stop squealing. She would shake her head in awe and stutter to get out the words, “ I can’t, I, I, I can’t believe it! We’re, we’re going home!”
On Friday night, September 11th, fourteen years after the Twin Towers fell and changed America forever and five months after my sweet brother-in-law, Jens, died and changed our family forever, Allistaire and I boarded a plane bound for Bozeman. She skipped. She hopped. She laughed. She squealed. Her eyes were bright bright bright. She was excited about everything!!! At long last the time came when we walked through the security doors in Bozeman and into the arms of Sten and Solveig. I cried with joy, with sorrow weakening my legs.
We didn’t do really much of anything exciting. We just spent the next eleven days together. Chocolate chip pancakes at the kitchen counter and the girls running around the house, laughing and coming up with strange horsey games. Emptying the dishwasher and waking to the sight of tall evergreens and swaying grasses outside of my bedroom window, knowing Sten lay next to me in the night, wind chimes in the breeze and a shocking array of stars and thick gauze of Milky Way, morning stars and elk bugling, watching a massive rain storm heading east over the valley, engulfing hills in gray mist, waiting for the tell-tale stirring of leaves and fir needles as the wind approaches, light slipping away and at long last feeling cool rain drops on my face. Extravagant. Luxurious. The girls playing on the driveway in the bright sun of a windy fall day, attempting to fly the dragon kite and eventually asking to walk up to Grandma and Grandpa’s. I tugged at weeds and pruned raggedy bushes, defied the bur weeds and stood with all my body weight on the shovel to remove ugly shrubs. My arms thrilled at the fatigue of pushing the wheelbarrow up the hill over and over again to the burn pile. Hawks circled and screamed in the wondrous blue above. Chipmunks with elegant little black stripes flitted about the yard. Aspen leaves shuddered in the wind, flashing green and yellow. Familiar faces, missed, loved, at Solveig’s school fun run where she proudly protected her little sister. Solveig. Oh Solveig, giggly girl with gorgeous gray-blue eyes, flecks of green and brown, ever rosy cheeks. Tucking her in for bed each night with a blow-kiss to end the day. In town, sweet friends at the school, at the soccer field, everywhere faces that love us, miss us, pray and cheer us on. Cheering on Pam as she ran her first marathon to help fund childhood cancer research. Running a short stretch with her toward the end – marveling at how the crossing of brutal paths has brought about this flourishing treasure of friendship – proud watching my friend persevere, propelled to push through the pain because of those 26 kids’ names neatly written out on the card pinned to her shirt. Allistaire laughed and laughed as she stood in the lake at Hyalite, ripples shimmering out around her in endless rings. “Is this better than Ron Don?” I asked. Smiles too big for her face as the fire light wavered orange, reflecting in her eyes and instruction on how best to roast a marshmallow. “Is this better than Ron Don?” I asked again. “Everything’s better than Seattle,” she declared with satisfaction.
Everyday I flushed her lines, took her blood pressure and temperature and gave her meds, encouraged her eating. But cancer, other than that wonky eye, sat in the back drop, it’s yell not so dominating over the hush of grass in the wind, of blue expanse of sky, of sleek brown horses flicking their tails, of rain storms and deer in the evening, of creeks tumbling over rocks and two sisters laughing, laughing, Sten and I smiling. I see that eye, that right eyeball that bulges just a bit, too much white showing under the pupil. I see it. It demands my attention, fairly screaming its urgency. But I tell it, “shush.” Be still. Be still. What will be will be. We’ve faced terrifying prospects many times before and yet she runs and laughs and bursts her bright being into the world. She may yet be given open doors, she may yet thrive. And if not…if not? Well, love her all the more Jai. Love her fiercely. Let go the insignificant things. Cherish. Savor. Focus in. See the beauty and life bursting right before me. Listen to the sweet lilt in her voice, watch her mind try to sort out how things work in the world, delight in her childish perspective. Sit and watch. Observe. Take it in. Swell with the incalculable delight of now. We are guaranteed so little in this life. We have insatiable desires, ever grasping for more, for better. But pause. Pause. What here? What bounty have I swept past, swept aside in pursuit for something more. I am deprived because I refuse to slow, to stop, to dwell in this present space. Somehow, imperceptible millimeter by millimeter the Lord is etching His ways into my heart. My spirit turning to His.
It’s early evening, Tuesday the 22nd of September. Fall is here. Warm light skims the ivory blanket, reflecting back against the far wall of our Ron Don room. Outside the city buses drive by, waning light seems to illuminate from within thousands and millions of green leaves, draped in layers and layers of organic veils like pieces of stained glass. We arrived back in Seattle late last night and got to the hospital by 7:30 this morning. It was supposed to be 45 minutes worth of procedures – a bone marrow aspirate and biopsy, intrathecal chemo, an endoscopy and a flexible sigmoidoscopy. We finally left about 5:30pm. After two hours of waiting in the pre-op area, labs drawn earlier revealed the need for yet another platelet transfusion, the previous only two days ago. So upstairs we went to the Hem/Onc clinic to wait for STAT platelets and the hour to get them in. Then back downstair to wait for the anesthesiologist finish his case because he had graciously insisted we were going to get this all done today. All went well and he determined that Allistaire’s heart is now “robust” enough to no longer require cardiac anesthesia. The GI doc was also pleased because all looked well with the exception of one overt and easily treatable problem. Apparently Allistaire has a whole lot of hardened stool backed up in her colon that he said can actually cause pain on par with a burst appendix. The fix is a big time dose of laxatives over the next several days to clear her out. All was well in recovery initially but then for several additional hours she struggled with extreme nausea and threw up dark reddish brown flecks of blood from the multiple biopsies that were taken. She sleeps now, Doggie tucked up under her head.
On Thursday Allistaire will have a brain MRI, a PET/CT and a CT with IV and oral contrast. This will both provide additional information about her gut and, along with results from the bone marrow test, help give a clearer picture of where things stand with her leukemia. A little over a month ago, pneumonia was discovered in her lungs from her previous CT. Dr. Ostrowski heard weezing in her lungs last week, though the anesthesiologist did not today. She’s been on antibiotics forever and was switched to an even broader spectrum anti-fungal once the pneumonia was discovered. Her ANC has been relatively decent so everything is being done as far as I can tell, to combat the pneumonia. The state of her lungs could impact her options going forward if more chemo is needed if the T-cells are not able to keep her cancer at bay. Interestingly, her persistence research labs from Day+14 from the T-cell infusion show that the percent of the genetically modified WT1 T-cells has actually increased from the Day+4 persistence labs up to about 10% from 6%. What this means as far as how effectively the T-cells might be working is unclear. It does, however, direct the course going over. Only once the percentage drops below 3% is the second and final infusion of T-cells given. This means at this point there is no plan in place for the second infusion and Allistaire has been officially been dismissed from the care of Seattle Cancer Care Alliance back to Seattle Children’s. She has tolerated the T-cells incredibly well with no known side-effects which is a great gift when dealing with experimental treatment.
As is ever the case, the days ahead are utterly unknown. The nurse today asked Allistaire what she’s going to be for Halloween. Halloween? Are you kidding? That’s a million years away. Our life is lived in less than hour increments. Last year we planned for the girls to trick-or-treat along Main Street at home in Bozeman with a party to head to afterward. A week before Halloween Allistaire’s relapse was discovered and 24 hours later we were headed to Seattle. I saw my friend Megan on the soccer field on Sunday. Her husband told me what field to look for her at but as I scanned the folk before me I realized I had no idea how long her hair was. We met at Cancer Support Community with her bald head and blue eyes as she battled lymphoma. She told me of being shaken by the news of her friend’s son being diagnosed with a brain tumor just days after he and her daughter had played together. He is one of two new cancer diagnoses of children in our town in the past few weeks. “I don’t take having my kids for granted,” she said.
“I feel like flesh rubbed raw,” I told my mother-in-law. Every touch, no matter how light, brings stinging pain. My reserve is wiped away. I have no buffer. The pain just penetrates immediately. Sometimes I gasp, fighting to get air, wondering how to keep going, disoriented by circumstances ever outside of my control that change constantly without warning. I read some simple yet profound words by Paul Tripp that met me right where I was, where I am. A friend shared a song. A song I’d like to wake to, to end my days with. The Lord provides. He hems me in behind and before. He goes behind me and breathes life into death, redeeming the brokenness, the loss, the ugliness, the sin and death. He guards my right foot from slipping. He is invites me to dwell in the shadow of His wings. He goes before me, sovereignly orchestrating the days ahead. He lays down provision, provision that I cannot yet imagine nor even know I will need. He gives me manna, sustenance each day. He destroys. He annihilates. He ravages. He calls me to harken to His voice that says what this life is about, what it’s not about. Damn the closet doors. They don’t matter. Forget that stretch mark strained bulge of fat on your belly. Let go. At long last release that white knuckled grip on what you “think” this life ought to be. Rest. Rest. Dwell now, here, in this fleeting moment, in the ragged land punctured through with un-doing beauty, with sights too glorious and too painful for words.
But sometimes I just flat out tell Him, “NO!!!!” I don’t want what you have for me God!!! I want this to be done. I don’t want this pain. I don’t want this chaos. We’re in the ER now (Wednesday morning). Allistaire continued to throw up and I had to call the Hem/Onc Fellow on-call last night. She took some of her meds but then threw up. She essentially hadn’t had almost anything to drink since the night before. I was worried about her getting dehydrated. She moaned in pain all night long but didn’t actually throw up until 5:45am. This time it was that dark green bile I had only ever seen during her ileus in July. Dread swept in. But right before she threw up she pooped which meant her gut had moved. A few hours later she threw up the green bile again. Immediately afterward I made her take all of her meds which she was able to keep in for over an hour which meant that hopefully they were absorbed. I called the GI clinic who instructed us to go to the ER to get her assessed. She has continued to throw up but is on fluids now and the CT w/contrast that was scheduled tomorrow will happen today as soon as we can get the oral contrast in. The thought of another ileus and the adjoining hospital stay is daunting.
I tell God, No, this is too far, too much. This has to stop. But who am I? What is the purpose of my life, of Allistaire’s? Is it not ultimately to know God and make Him known? Isn’t it really about yielding to His will because the source of His will is His love for us, His goodwill to all men, His desire that all might come to see Him as He is – the only source of true life? Am I really going to say No to that? Because that is not love. Love yields and sacrifices for the good of another. That is what God is calling me to – Jai, will you lay down your life for another? Will you lay down your expectations and declarations of what you think you deserve and trust Me to walk you through this life in a way that allows My beauty and truth to be seen? I used to think I wanted to be a missionary. I had visions of jungles and Africa. But isn’t being a missionary really just saying Yes to God that where you are is where He wants you? Who am I to define the boundaries of the mission field? What if there’s one conversation with one nurse or one fellow parent that this is all for? What if there is one day that all these days will have brought me to that is the day the Lord moves in the heart of another through our brutal road? Will I love? Because loving others means yielding to the Lord right now, here. Man it is so very hard to do because everything in me rages that this is all fucked up! And it is! It is! Christ came into the world precisely because it is a mess and fundamentally broken. God could have fixed everything that very moment it broke, but He didn’t. Christ could have brought everything into redemption when He walked on earth but He didn’t. God has been at work from before the beginning. He is an epic God. His scale is far vaster and more complex than I can begin to imagine.
One night at home this past week, Sten and I sat on the deck in the dark, looking up at the staggering beauty of the star filled sky. I asked him about one particular cluster of stars. He pulled out his iPhone with the snazzy app that’s supposed to allow you to point your phone in the direction of the stars of inquiry and it will show you their names and the surrounding constellations. As he fiddled with the settings we discovered the app also allows you to see not just the visible light spectrum part of the sky, but also you can see it based on the gamma rays and x-rays present. Each selection on the app allows you to “see” a different portion of the electromagnetic spectrum the our eyes cannot detect. Eleven years ago I taught Physical Science to 9th graders. I found myself swooning whenever we discussed the electromagnetic spectrum – so much reality always right there but utterly invisible to me. My eyes, my body, my senses had no way to detect infrared light or radio waves and yet, they really were there – if only I had a way to “see” them. I believe the way the Lord knows and sees the universe and time is a bit like the electromagnetic spectrum. He can see ALL that is there, that is real, at once, in full clarity and detail. I, well, I can only see the smallest segment of the vast reality that is.
Paul Tripp’s words that helped me last week
“It is Well” song that encouraged me
Winter Solstice is passed. The darkest night of the year is behind us. Ever so slowly, at a staggering speed, we make our way back toward the sun.
Conglomeration of Joy 
